Measuring coping in people with amyotrophic lateral sclerosis using the Coping Index-ALS: A patient derived, Rasch compliant scale

• Published in: Journal of the neurological sciences Vol. 421; p. 117285
• Main Authors: Young, C.A., McDermott, C.J., Williams, T.L., Ealing, J., Majeed, T., Al-Chalabi, A., Dick, D.J., Talbot, K., Harrower, T., Pinto, A., Hanemann, C.O., Burke, G., Roberts, R., Mills, R.J., Tennant, A.
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 15.02.2021
• Subjects: Adaptation, Psychological; Aged; Amyotrophic Lateral Sclerosis; Coping; Disease-specific; Humans; Middle Aged; Motor neuron disease; Patient reported outcome measure; Psychometrics; Rasch; Self Report; Rasch; Amyotrophic lateral sclerosis; Coping; Patient reported outcome measure; Motor neuron disease; Disease-specific
• ISSN: 0022-510X; 1878-5883
• DOI: 10.1016/j.jns.2020.117285

The progressively disabling and terminal nature of ALS/MND imposes major coping demands on patients. We wished to improve the psychometric properties of our previously published MND-Coping Scale, so that parametric analyses were valid, and to make it simpler for patients to complete and clinicians to score. After a new qualitative analysis of 26 patients with ALS/MND, the draft Coping Index-ALS (CI-ALS) was administered to 465 additional patients, alongside COPE-60, General Perceived Self Efficacy scale, and WHOQOL-BREF. Validity of the CI-ALS was assessed using the Rasch model. External validity was checked against comparator measures. Thirteen centres contributed 465 patients, mean age 64.9 years (SD 10.8), mean disease duration 28.4 months (SD 37.5). The CI-ALS-Self and CI-ALS-Others both satisfied Rasch model expectations and showed invariance across age, gender, marital status and type of onset. Expected correlations were observed with comparator scales. A nomogram is available to convert the raw scores to interval level measures suitable for parametric analysis. Coping abilities in ALS/MND can now be measured using a simple 21 item self-report measure, offering two subscales with a focus of ‘coping by self ’ and ‘coping with others’. This allows clinicians to identify individuals with poor coping and facilitates research on interventions that may improve coping skills. [Display omitted] •The Coping Index-ALS has 2 subscales which have no Differential Item Functioning by age, gender or duration of ALS/MND.•They cover 2 aspects of coping: ‘self’ focused, and ‘others’ concerning outside support.•Both subscales can be summated to measure different important aspects of coping ability.•Their raw scores can be translated to interval level measurement for parametric analysis.•The CI-ALS supersedes our MND-Coping scale for clinical use and research.